Pain and the reduced function of my hands significantly affect my life. Knowing what components are structurally compromised and vulnerable to injury due to Ehlers-Danlos syndrome (EDS) aids me in the prevention and treatment of my injuries.
Have you ever seen a toy grabber hand? It is a mechanical “hand” made of segmented fingers connected by cords that run through a handle to a squeeze-bar mechanism. Squeezing the bar pulls the cords, causing the fingers to curl. Sophisticated versions have separate triggers for each finger.
Human fingers operate in a similar way. Fingers have no skeletal muscles — they are controlled by tendons attached to muscles located in the hand and wrist. Ligaments connect the bones of the finger segments, running over each knuckle and keeping the tendons in place. As the muscles in the hand and wrist contract and relax, the tendons are pulled, resulting in movement of the bone segments, like how the toy fingers are controlled by the cords attached to the squeeze bar.
Again and again, now and later
EDS affects the structure of tendons and ligaments. Much of my hand pain is due to strain. It does not take many repetitions for me to get repetitive strain injury. De Quervain’s tenosynovitis, carpal tunnel syndrome, paresthesia of my hands, and lateral epicondylitis (tennis elbow) are not uncommon conditions. But to have them without any trophies as a consolation seems a bit unfair. While EDS makes for an interesting explanation, I would much rather have had the life experiences that typically accompany repetitive strain.
My tendons and ligaments overstretch, causing the tendons to slip out of their natural grooved positions, which can lead to my bones moving out of place.
Bones with too much freedom are like rowdy dogs on long leashes: One minute they appear to be under control, the next they’re running for each other, and the leashes are too long to stop them before they make contact.
Pain from dislocations and subluxations (partial dislocations) is a cue to stop whatever activity has caused it to avoid injury or further damage. Unfortunately for me, my body often opts for the “pain deferment program” — a “no pain now, but you will pay later, plus interest” type of arrangement. Initially, bone-to-bone contact affects the soft tissue located at the end of the bone. Once that is worn away, the bones damage each other and can cause osteoarthritis.
I won’t allow the problems that ended my glassworking career to claim the remainder of my abilities — I have a plan.
Keeping superpowers in check
My fingers can bend backward on command and sometimes drift into awkward looking positions on their own. When I was a young person, moving my fingers into positions that no one else could was painless, and I didn’t understand why my friends cringed at my “cool party tricks.” These days, when I see my children performing the same stunts, I wince because I have a better understanding of the implications. They enjoy their ability to do things with their hands that other people cannot. I hold a “no party tricks” policy at our house — the novelty factor is not worth the pain and loss of function.
Not all superheroes wear capes — some wear splints
I follow the recommendations my occupational therapist (OT) gave me: Avoid grasping, clenching, and pinching, and use adaptive aids. She prescribed “hand rest” and made custom splints to keep my hands in a neutral position. She made finger splints to keep my fingers from bending backward. Upon confirmation that these measures were helpful, my rheumatologist prescribed orthotic ring splints, which my OT had measured and fitted for me.
I now wear ring splints on my fingers to rein in my party trick superpowers. They reduce my pain and will hopefully prevent or treat the early stages of boutonnière and swan neck deformities. A bonus: They look like unusual jewelry and add to my overall mystique.
I cannot change the underlying genetic mutations that cause EDS. But I can slow the progression of the processes to which I’m predisposed due to EDS, such as tendinitis, bursitis, and osteoarthritis by using adaptive aids, resting my hands, and applying splints. Though these measures can be awkward, they’re worth employing. I will discuss my favorite adaptive aids and gadgets in future columns. Perhaps we can exchange some ideas.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.